"We'll Never Leave Anybody Behind"

Monday July 09, 2018

I believe Carlton could connect anyone to the resources they need. Maybe he and his wife Harriet go to the grocery store with a list; they probably leave with all items checked, plus a half dozen fellow shoppers—calendars marked to learn about Parkinson's at the American Lake VA.

This is based on one conversation with him. But there's no doubt that Carlton has brought people together, a great community in need of support. And I'm so thankful I got the chance to talk to him about Western Washington's first support groups for Veterans with Parkinson's.

How did you decide to start a support group for veterans with Parkinson’s?

I saw a need for vets with Young Onset, like myself.

The first line of defense for Parkinson’s is to learn, to find out where to go next. In the military’s chain of command, the drill sergeant is first in line—the go-to person. If the drill sergeant doesn’t have the answers, they’re going to find them up the chain and make them available to the soldier.

Looking at [Parkinson’s] from that scheme: I didn’t get any answers when I was diagnosed. There was no drill sergeant [laughs].

That’s why this support group fits [vets] who need to know what’s going on with Parkinson’s. And I’m tipping my hat to Sarah Winter [Social Services Manager of Northwest Parkinson’s] and Annie Gellenbeck [of the American Lake VA]. They’re the core people who help put this together—I was just an innocent bystander!

You filled a missing role: a go-to person for Parkinson’s! Did you conduct outreach for the group?

Well, I did in certain ways. I went into the cafeteria at the American Lake VA, and opened up the floor with: “We’ve got a Parkinson’s support group coming up; you’re welcome to join in.”

And they looked at me and said, “What is this again?” [laughs].

I said, “If you have Parkinson’s, or if you know somebody who has Parkinson’s, feel free to come to this meeting. This support group is for your benefit.”

My hope [for the group] is so full. I’d like for anyone to be able to come by and find out who has what neurologist, who broke ground on certain research. So many things can and will come out of the group.

Information on Parkinson’s doesn’t always come in one easy-to-read book. Sometimes we need others to help break it down for us.

Does [the VA support group] already feel like a new community?

Yes, definitely. Some people we know from other support groups, and [they] really feel the openness of veterans. When we soldiers get together, we exchange phone numbers right away so we don’t break contact. The information spreads fast, and we run with it. It’s amazing.

When I was diagnosed, I wasn’t told what brought it on, what caused it. But I really needed to know what I could expect next. And I didn’t get those answers.

Parkinson’s doesn’t discriminate between veterans and non-veterans. [The VA support groups] welcome everyone affected by Parkinson’s, under the umbrella of the military—veterans, their family, friends.

When were you diagnosed?

I was 56. I left the military in 2012, so diagnosed in 2011. But they said I could’ve had it as early as 2009.

It sounds like you’ve got great outlets. What branch of the military did you serve in?

Army Aviation. I enlisted in 1986, in New York, and retired April 30, 2012. I served for 26 years. Washington State was my last station.

I like Washington for the air. It has the cleanest air around.

Did your whole family move to Washington, too?

My first child is serving in the Air Force. I have five kids, ranging from 40 to 14. Most are in Washington, but the rest are scattered throughout the United States.

They’ve got a good dad, huh?

Yeah, they do. They do.

Do you think serving in the army has shaped the way you approach life with Parkinson’s?

The military didn’t exactly shape me to take on everything that’s thrown at me. But it did do some things.

You know the affection you have for your family? The military taught me to cherish that.

It gave me a discipline to know the difference between what [really matters] and what doesn’t. It taught me to be quick on my feet, and to remember: you’ve got a purpose. Because in the military everybody carries out a collective goal.

This is a personal battle [with Parkinson’s]; in the military you do the fighting collectively. Every person with Parkinson’s that you see or know has an individual battle to fight.

And you can fight it not by doing nothing, but by doing something.

To me, that’s the beauty, the grace, of people like yourself: you make this individual battle more livable, and more collective, too. Everyone experiences Parkinson’s differently but we can live it out together. We become a team.

Yes. One person tells another person and lo and behold we’ve got a chain link going. It never ceases to amaze me. We’re here for the soldiers and they know: we’ll never leave anybody behind.